Thoughts and Musings…Hope and Hugs…

The last few days have been a bit of a struggle. My 21-year-old niece has been fighting for her life. This quote truly hit home!

49229-Thomas-Fuller-Quote-Health-is-not-valued-till-sickness-comes.jpg

Alyssa Jo from Kokomo (as my dad lovingly called her) was born with cystic fibrosis. It is a horrid disease.

It is a disease that is as hard to pronounce for little kids as it is to live with on a daily basis. Young kids think it is pronounced 65 roses.

Can you imagine, waking up every day and not being able to breathe? I surely can’t and I will tell you that I truly take that for granted (as I am sure most anybody does). Alyssa can’t!

I remember AJ as a little girl, my brother and his wife always having to beat on her back to loosen the mucus that gathered in her lungs to clear them out enough for her to breathe. They always felt they were abusing their baby girl, but if you did not do it, she would not have lived.

Alyssa has been inside the hospital so many times that you lose count! At least on a yearly basis she would be in because she caught a bug and her breathing became more labored. Constant medications, constant treatment, constant prayers, constant…constant…constant!

A person with CF has to complete a combination of the following therapies on a DAILY basis:

  • Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Some airway clearance techniques require help from family members, friends, or respiratory therapists. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.
  • Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.
  • Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.

My niece is waiting to be put on the transplant list for new lungs. She was not sick enough a couple of weeks ago to be put on the transplant list — and now, she is too sick! The doctors are working hard on getting her to the point when she can be added.

AJ had emergency surgery late yesterday (3/20). They have bypassed her heart and lungs so they don’t have to work so hard right now for her. She continues to be on a ventilator and will be on it for a while. She is a fighter and we hope she continues to fight the good fight. She’s turned this corner but is not out of the woods yet, by any means.

The hardest part is being in Wisconsin as they are going through these struggles in Minnesota. I want to be there in the worst way–not only for Alyssa, but for my brother Doug and his wife Sam and their other kids Corina and Ryan. However, I am battling a cold right now and I can’t risk compromising anyone’s health.

This reminds me of one of my favorite cards. Hope and Hugs…that and many, many, many prayers are what I keep sending to my brother and his family these days!

Hope & Hugs Flat with envelope

Hug your loved ones everyone. You never know when you will be able to do so again! And if you believe in the power of prayer (I do–as I am living proof they work), please say a prayer for AJ and her family!

THANK YOU!

Cindy Lou

 

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4 thoughts on “Thoughts and Musings…Hope and Hugs…

  1. Prayers for your niece and your entire family. Hold onto hope. I have a former student who struggled with Cystic Fibrosis, even had a child, was really sick but finally got well enough for the double lung transplant and she is VERY healthy today. Hoping to offer some hope to you in this time of fear!!

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  2. Cindy, I’m praying for Alyssa and the entire family. I hope she will soon be on the transplant list, and that her miracle will happen! ❤️

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    1. THANK YOU so much Kathy. Keeping fingers crossed that she gets put on the list tomorrow. Once all of this happens, then we work on managing benefits and fundraisers to help with costs/expenses.

      God is good, all the time — all the time, God is good!

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